Key Associations Urge Clinicians to Inform Patients about SUDUP Risks

NEW YORK – Patients with epilepsy should be told about their uncommon risk of death, especially if they suffer from tonic-clonic seizures, new guidelines state.

Controlling those seizures might reduce the risk of sudden unexpected death in epilepsy (SUDEP). The report, published online by the journal Neurology, shows that being free of seizures, particularly tonic-clonic seizures, is strongly associated with a decreased risk of SUDEP.1

The guidelines, authored by a group led by Mount Sinai Health System researchers, were co-developed by the American Academy of Neurology (AAN) and the American Epilepsy Society endorsed by the International Child Neurology Association.

“It is important that the rate of occurrence of SUDEP and the specific risk factors for SUDEP are communicated to persons and families affected by epilepsy,” explained lead guideline author Cynthia Harden, MD, of Mount Sinai Health System.  “Our guideline brings clarity to the discussion, giving health care providers practical information they can use to help people with epilepsy reduce their risk.”

After reviewing all available evidence, the authors determined that SUDEP affects about 1 in 1,000 adults each year and 1 in 4,5000 children.

A generalized tonic-clonic seizure, which involves the entire body with convulsions and a loss of consciousness, was determined to be the major risk factor. The guideline stated that patients with three or more of this type of seizure per year are 15 times more likely to die suddenly than those who do not.

For those patients with frequent tonic-clonic seizures, the risk of SUDEP rises to 18 in 1,000 deaths per year. That’s why the guideline urges clinicians to inform patients of the risks in hopes of motivating them to increase compliance with medications.

Other potential risk factors for SUDEP were analyzed in the guideline, but the evidence was not strong enough to support recommendations regarding these risk factors in the medical management of persons with epilepsy.

“More research is now needed to identify other preventable risk factors so that future studies can focus on finding ways to reduce just how often SUDEP occurs,” Harden said.

  1. Harden C, Tomson T, Gloss D, Buchhalter J, et. al. Practice guideline summary: Sudden unexpected death in epilepsy incidence rates and risk factors: Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology and the American Epilepsy Society. Neurology. 2017 Apr 25;88(17):1674-1680. oi:10.1212/WNL.0000000000003685. PubMed PMID: 28438841.

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